Who is on your team?
 General
practitioner/pediatrici
an
 OB/GYN
 Nurse
 Neurologist
 Physical Therapist
 Cardiologist
 Occupational Therapist
 Pulmonologist
 Social worker
 Gastroenterologist
 Nutritionist
 Sleep medicine
 And so on...
 Speech/swallow
therapist
Who is team captain?
 Who to call with DM questions?
 Who to direct you to consultants?
 Who to coordinate care?
Picking and Educating your team

Ask if they have treated/are familiar with myotonic dystrophy (or
muscular dystrophies in general)

Medicine is lifelong learning

Ask questions!

Ask team to contact your DM doc with questions

Give them the websites, bring in the article you have questions about

Network!




Who do your fellow DM patients recommend? (MDF VIP site)
They’ve already “broken them in”
The more DM they see, the more they will learn- from you, and others
Teaching institutions- spread the knowledge, teach the future docs!

Residents can be a “2 for 1”
What is a medical home
 Patient centered care for patients with complex
medical needs
 Focus on prevention, wellness, acute and chronic care.
 Communication between all care team members
 Goals of quality, safety
 Health care reform policies are emphasizing medical
homes
Help in navigating the medical
system
 family or friend
 Patient advocate
 Clinic or school social worker
 Hospital discharge manager
 Insurance case management
 Medicaid
 Private insurances (Blue cross/blue
shield, Aetna, Cigna, etc).
 Insurance open enrollment
 “Preferred providers”
Prepare for your visit:
Bring a list of questions
 What changed since
your last visit
 Circle the most
important question
 Your worries
 Your families’ worries
If your visit is only 20 minutes, where do you want to start?
One last thing, doc
 Don’t save the best for last
 Afraid to ask?
 Genetic counseling question?
 If can’t cover it that day,
 Ask for followup for time!

Getting the most out of
your visit
Muscular system

Central nervous system

Cardio-vascular system

Visual system

Respiratory system

Gastro-intestinal system

Genito-urinary system

Reproductive system

Metabolic & endocrine system
Need all to be
reviewed during
your follow-up
visit
=
54 concerns
Health Supervision Checklist
Gangon et al, Neuromsucular Disorders, 2010: p 347; MDF website
Your medical records
 Fax or send before your visit
 Especially for a new doctor
 Electronic medical records (EMR)
 Vary between hospitals
 Multiple doctors at same institution
can view same EMR
 HIPPA restrictions
 Health insurance privacy and
portability
 Be both specific and inclusive:
providers, test, image, future dates.
Release of information form
Patient Portal
benefits
 Request appointments
 Appointment reminders
 View test, lab results,
imaging reports
 Send messages to your
team
 Request medication
refills
limitations
 Full records may not be
available
 Delay in lab result posting
 Some note types not
accessible
 Genetic, psychiatric
High tech
Pros: immediately available in
emergencies
Cons: have to keep them
updated
Low tech
Birthdate 1/1/1968
Myotonic dystrophy 1, sleep apnea, atrial fibrillation
Updated 12/1/11
Allergies: penicillin, bees
Warning: anesthesia complications in myotonic dsytrophy
See myotonic.org
* I have a St. Jude’s heart valve
• I have a pacemakerMeds: coumadin 2 mg Tues, Thurs, Sat: 1
• Model #####
mg Mon Wed, Fri Sun
levothyroxine 0.125 mg in the
BiPAP settings 10/3
morning
oral contraceptive
Contact person: John Doe (brother)
multivitamin
Cell 1-801-666-6666
calcium 500 mg twice a day
vitamin C 1,000 mg a day
My doctors:
ginko biloba
Dr. Pepper- primary care -1-801-777-7777
Dr. Mudd- cardiology 1-801-888-8888
Dr. Sampson- muscular dystrophy 1-801-999-9999
Managing your Medical
Records*
 Online
 Blue Button
 MyMedicare.gov
 Medicare, Medicaid,
Tricare, Aetna,
RelayHealth
 Patient Records Doctor
(Android)
 Capzule PHR (iOS)
 My Medical (iOS)
 Downloads claims
 www.freehealthtrack.com
 Online, laptop, or
smartphone
*Check security measures; regular Dropbox and gmail are not secure for health
information
Make a binder
 Sections for:
 Heart
 Lungs
 GI
 Sleep
 PT
 Etc..
 For kids
 IEP
ECG traces- ask for copy
Collect team cards
 Circle best contact
number for questions
 Share with other
providers
 cc: your team AND you
Brown bag your medications
 Prescription medications
 Need refills?
 Expired?
 Stopped taking?
 Over-the counter
 Vitamins
 Herbal medicines
Preparing for surgery
 Up to date ECG?
 Up to date pulmonary function testing?
 Talk to your surgeon about DM
 Meet with to your anesthesiologist prior to surgery,
and not just the morning of!
 Choice of anesthetics
 Respiratory, secretions management
 Cardiac monitoring
 Plan of action in case of complication
Rehab and Prehab

Surgery, injury or illness
 Slower recovery
 Longer recovery
 New/different baseline?
 Prehab?
 If scheduled surgery, get “tuned up” before
 Consult your PT
 Review your medications
Incentive spirometry
Surgical concerns
 Have they talked to your DM doctor?
 Post operative plan:
 Same day/outpatient surgery vs. observation overnight?
 Respiratory, cardiac monitoring
 Watch for pain medication side effects
 Pain medications- “start low go slow” philosophy
 Worsen sleep apnea
 Constipation
 Can cause delirium
Delirium
 Also called altered mental status
 Confused
 Not behaving or thinking normally
 Excessively sleepy
 Hallucinating
 Poor prognostic sign
 Can be caused by multiple underlying problems:
medications, respiratory, metabolic, infection, etc…
Getting a second
opinion/consultation
 Don’t be afraid to ask
 A doctors generally
welcome outside opinions
 Insurance generally OK
with it with preapproval
In an emergency
 What is an emergency?
 Heart symptoms
 dizziness, fainting
 Lung symptoms
 Abdominal symptoms
 Medication side effect
 Ask you doctor–
 when should I call you?
 When should I call 911?
 When should I go to emergency room?
Resources from MDF
 Anesthesic risks
 Anesthesia management recommandations
 Physical therapy section
 Occupational Therapy section
 Registry section